To Be Continued...
That's sort of how it felt, getting THE phone call from the Cleveland Clinic this afternoon. I'm not entirely sure how to feel right at this very moment. Part of me wants to be mad. Part of me wants to be cool. I'm just not entirely sure I am thrilled with the way things just went down. And I don't mean how it pertains to Bennett's Oligoastrocytoma. I mean just how the whole thing played out today.
So last Friday I got the call that they would review on Tuesday and let us know what the results were. No call came in on Tuesday. OK, got it. People are busy. By afternoon Wednesday, we called them. Nobody called back on Wednesday at all.
So today comes, we call again. We speak to the receptionist-type person again, not sure what her title is and I am not naming names, but she sounds like a nice enough person. Says she'll relay the message again and someone will get back to us.
Ultimately, as it turns out, the NP who I spoke with Friday was out today, so the receptionist-type person contacted someone out there and called us back. But the info was very vague. Here is a best-of-my-ability recap
Receptionist-type Person: Is this Mr. Lilly?
Me: It is.
Receptionist-type Person: I spoke to your wife earlier, I have some information regarding the Tumor Review Board.
Me: Oh, great, we were hoping to hear back.
Receptionist-type Person: Dr. Bingaman basically recommends serial MRI at this point.
Me: What does that mean exactly, you mean fairly frequent MRI's, keep an eye on it kind of thing?
Receptionist-type Person: Yes.
Me: But when do we start that?
Receptionist-type Person: That would be determined when you meet with Dr. Bingaman and Dr. Tekautz, a Neuro-Oncologist.
Me: But when does that happen?
Receptionist-type Person: We'll be coordinating with Dr. Takautz office to try to figure out a time that falls in that window of follow-up so when you come up here you can see both Doctors on the same day.
Me: Oh...OK, so you are going to be contacting us with this date, we do not need to call you back to follow-up?
Receptionist-type Person: No, we'll call you when we get the details worked out.
Me: OK. Did they mention anything about chemotherapy?
Receptionist-type Person: I don't know anything about that, sorry.
Me: OK, thanks, I'll let my wife know you called and let us know when the appointment will be.
And that was that.
Essentially? It's the Do Nothing/Wait and See Plan for now. Joy. I love those kinds of plans. It makes each and every day such a wonderful, happy experience.
I'm just a little irritated that I didn't get this news from anybody who would be considered an expert, even an NP, a doctor or something like that, someone to whom I could direct some fucking questions.
I understand why...they probably don't KNOW anything yet and they likely WILL be scheduling that MRI for 3 months from surgery or SOMETHING like that, and from what Jen researched these kinds of tumors MAYBE don't respond well to the kind of chemo a kid can take we THINK though we aren't SURE but I should not be sitting here at my fucking computer GUESSING at what MIGHT be the reasons of what MAY or MAY NOT be happening MAYBE sort of SOMETIME down the line.
It just sucks to have to be in a position of waiting a few weeks to get in front of anyone who actually DOES know something.
That's fucked up.
Anyway, that's the news, for what it's worth. Which isn't much. Hope you enjoy the pics of a stitch-free Bennett.